One woman's quest for better health… living with lymphoedema

Monthly Archives: November 2013

I saw this article via LinkedIn and it reminded me that Lymphoedema is not just something that happens to arms and legs, it can occur in any part of the body. This can be the result of secondary Lymphoedema or Primary Lymphoedema. For obvious reasons LE of the head, neck, abdomen, trunk and chest are much harder to treat. MLD becomes difficult and custom-made garments can have problems fitting correctly. When more than one area is affected people experience physical problems as well as a compromised Lymphatic system. There is little support or emphasis on LE for areas other than arms and legs, therefore it is great to see this article which is a patients guide to head and neck Lymphoedema.

Patient guide to head and neck lymphedema following cancer treatment
By Ryan Davey
Scientist and Business Owner

We just completed a little summary of the latest research on head and neck lymphedema (HNL) and thought we might share it with the group. The prevalence of HNL is very high in patients treated for head and neck cancer, but there isn’t a lot of information available on the condition, nor are there many clinical studies. If you’re interested you can find our patient guide here:

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This blog has the stories of mine and others journey with Lymphoedema, how, why and where! We are each different in how we came to have Lymphoedema, but what we have in common is stepping out into the darkness in search of surgery that may help or heal the Lymphoedema…. What we would love is to throw away the compression garments and say that’s it… No more!!!! However the journey is slow, filled with ups and downs, as the research and knowledge grows more progress is made but the waiting to see if nodes have grown, lymph vessels established takes time. My thoughts are that for legs more than one transfer is needed as it is a larger area than the arms, but only time will tell! For some it is a combination of LNT and liposuction or just the liposuction. Now we have a new area to monitor with the use of Stem Cells being added to the mix.. We await the progress of Val who is having Liposuction and stem cell therapy. I must add though at this stage there is no proof that the stem cell therapy works and it is very much experimental… Follow up needs to be done over a number of years with all these surgeries. Specialist Lymphoedema Liposuction (not cosmetic liposuction) reduces swelling but a compression garment needs to be worn 24/7 after surgery to stop the limb re swelling..

If you are new to this blog there is a great deal of information re surgery and self-care. If you would like to find a particular topic use the search button found by scrolling down the posts to the bottom.

Nothing in this blog replaces medical advice and I make no opinion on which surgery or procedure is better or worse!! I just wanted to bring together people’s experience from a personal, patient centred view-point. I hope to be able to follow those who have given their stories for a number of years to get a true picture of their progress. I would also love to share more posts about people’s personal experiences of either living with Lymphoedema or the surgeries that people have had.. My email is helenbrd@bigpond.net.au

If people wish to remain private I will not use real names, but the more we share the more we learn… Thanks for all the support, wonderful comments and just being there for me, the Internet is an amazing tool when stepping out alone.. I feel it is so important that we “Believe in Ourselves”… To those having surgery I wish you good luck … You know who you are…Be strong and heal well .. Helen

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Thanks Val for allowing us to share your journey via this blog… I will be following with interest the progress and results … Good luck on your surgery day…

I must note that this treatment is experimental and there have been no clinical trials nor results from previous patients other than they are still wearing compression… at the moment the results are the same as for liposuction.. Caution should be used with stem cells at this time as they are being offered with out the backing of results to show safety and results … The info in this booklet is very helpful in making decisions re stem cells and gives a better understanding of where this research is at… https://lymphnodetransplant.wordpress.com/2013/12/08/features-of-unproven-stem-cell-treatment/

My name is Valerie, I’m 52. I currently live in South Korea, with my wonderful husband and our two Cairn Terriers.

This blog aims to reflect my thoughts and opinions on receiving a different new treatment for a couple of medical conditions that are making my daily living much tougher. I hope this journey and collection of facts and thoughts will be helpful to other sufferers about this new treatment, but I am not a medical person, so they may be simplistic rather than medically correct or complete.

I am just an average human being, looking for a cure. If you are too, then – Welcome! I would be happy to share the journey of this experience with you, please feel free to ask if there’s anything you want to know about what happens over the new few months.

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I was very excited yesterday when I found I had been given an award for the… Sisterhood of World Bloggers… worldwide there are thousands of blogs, so it is always a great honour when someone finds my blog worthy of an award. This award was given to me by Jazzybeatchick Writes … this is a great blog which I really enjoy reading for her content, music and pictures..

1 Provide a link to and thank the blogger who nominated you for this award.
2 Answer ten questions.
3 Nominate 10-12 blogs that you find a joy to read.
4 Provide links to these nominated blogs and kindly let the recipients know they have been nominated.
5 Include the award logo within your blog post.

Well as always when there are rules I am inclined to bend or break them!!! I find it impossible to pick which 10 or 12 blogs I should choose, as all the blogs I follow I enjoy, you can see these listed at the end of my posts. How ever I have decided to give this to just one post that has a special place in my heart at this time…

In this blog Mogatos says…. I never really worried or thought much about cancer … until my sister was diagnosed with breast cancer at the age of 28. At the time, I was 21 years old, naive, in college, worried about what plans I had for the weekend, and didn’t really grasp what that meant. More than ten years later, my sister is gone, my mom is gone (ovarian cancer), and I just had a prophylactic bilateral mastectomy and started the breast reconstruction process on January 22, 2013. I said NOPE to breast cancer.

I am pleased to pass this award to Mogatos so you can read this courageous women’s story…

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This is something we all need to remember in our everyday lives… Stress and negativity will lower your immune system and you become vulnerable to coughs, colds, flu, infections etc. When your immune system is compromised it takes longer for infections to heal. Those with Lymphedema must be especially wary of this, as their Lymphatics are compromised too.. This can lead to cellulitis which we all know can be a major problem. What helps you deal with stress?? Some suggestions are exercise, meditation, yoga, mindfulness, swimming, fun hobbies, talking with friends, healthy diet and last but not least sleep and rest… How do you deal with stress??? Please add your suggestions to the comments… Have a great weekend… And remember if you have no control over it do not stress about it!!!

Dara Insley was diagnosed with breast cancer in 2009 and subsequently developed lymphedema. She has refused to let it slow her down and she continues to be fashionable by wearing compression sleeves by Lymphedivas. A partner of LBBC, LympheDIVAs compression garments allow women living with lymphedema to control their condition beautifully. The fashionable yet medically correct sleeves and gauntlets are available in a multitude of patterns and colors, including commemorative C4YW designs. LympheDIVAs donates $10 from every C4YW sleeve, $5 from every C4YW gauntlet, and $15 from the sale of each C4YW set to benefit LBBC and YSC’s annual C4YW conference. Here is Dara’s story…

It was within a year of my breast cancer diagnosis. At the end of chemotherapy, double mastectomy (without reconstruction, by choice), an upper lymph nodes removal surgery, and radiation, I realized I had lymphedema.

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This is the letter that is to go out to Alumni of Macquarie University to raise funds, for equipment to improve imaging of the Lymphatic system, prior to a Lymph node Transfer… Lets hope they raise the money they need and that my little story will allow people to understand the need for research in this area.. Will let you all know how this goes!!

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One of the things I love to do each year is to visit Sculptures by the Sea. This is an exhibition of sculptures along the coast line from Tamarama to Bondi beach, nearly a 100 altogether. My favourites are the ones that embrace their chosen position, many are often a great source of conversation comparing title to appearance!!
Click on this link and it will show you the exhibits for this year with some very professional photography!!http://www.sculpturebythesea.com/Home.aspx

Below are some of my personal favourites… Enjoy…

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Today I have a special message to say that we are all more than our Lymphedema. There are days when it seems to take over and become overwhelming but we must remember to never let it define us. There is so much more to us than Lymphedema, we need to be strong, we need to build awareness so others understand, we need to educate, we need to share and support each other. We are not alone…

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Lymphoedema Awareness

I am writing this blog to keep a record of my Lymph Node Transplant in the hope of inspiring and helping others.
I wish to bring awareness to the issues of Lymphoedema so that people will better understand this very difficult and little understood health problem. We need more research and a brighter outlook for those with both Secondary and Primary Lymphoedema.
Items in this blog are to only be used in conjunction with a medical diagnosis and with a treatment plan specific to your needs. Please check with your lymphoedems specialist if you are feeling unwell or unsure about treatment and care.. MLD should never be used if you have an infection..Please share this blog with your friends and family... Thanks

Feel free to share with others.. it can be distributed via social media, reblogged or added to websites.. please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog
https://lymphnodetransplant.wordpress.com/ Thanks